CML Advocates Network

The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting is taking place June 2–6 in Chicago.

At the CML Education Session, CML expert Dr. Ehab Atallah, MD, associate professor of medicine in the division of hematology and oncology at the Medical College of Wisconsin, has been speaking during an Education Session about discontinuation of tyrosine kinase inhibitors in chronic myeloid leukemia (CML) presenting about the "Promise of stopping TKIs: Is it ready for prime time"?

Even though no new data was presented (see ASH 2016 Report), it has been very interesting to listen to the US perspective.

We are proud to welcome a new member organisation to the CML Advocates Network: Philadelphia LMC based in Algeria. The CML Advocates Network now totals at 115 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

Not many weeks left until the European Hematology Association's annual congress opens its doors in Madrid, Spain. We are excited to see many of you at #EHA22 2017!

Over the past months, we've been working hard with the EHA team to set up an attractive patient advocacy programme during the congress.  We have a joint booth of all European patient advocacy organisations, and once again also having a “Patient Advocacy Track” within the scientific program during the congress. Up to 50 free congress registrations were offered to patient advocates, so we hope there will be strong patient attendance!

Click on "Read more" what is offered specifically for patient advocates, hematologists and other stakeholders at EHA this year.

This year EHA Congress will be held on the  22-25 June 2017 in Madrid, Spain. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is once again offering a “Patient Advocacy Track” within the scientific program.

EHA FELLOWSHIP -- APPLY NOW, UNTIL 29 APRIL!

Once again in 2017, EHA will provide 50 Fellowships for their EHA congress which will be held during the 22-25 June 2017 in Madrid. The Fellowship provides free access to the full congress, but also includes a compulsory "capacity building programme" to educate all attending advocates and further their development and knowledge about haematology and science.  

In collaboration with EHA and the European Reference Network EuroBloodNet, we're taking the next level this year and will provide a "EHA Capacity Building Meeting" for all Fellows on 22 June, from 14:00 - 17:00.

In this meeting, EHA Fellows will hear about EuroBloodNet, the ePAGs, about interpreting scientific data, and about how to get the best out of a scientific conference EHA (for all disease areas). This will then be followed with a summary of the most important data presented at EHA, specifically for Fellows in MDS, Myeloma, Acute Leukemias, Lymphomas & CLL, MDS and CML. The capacity building meeting on 22 June will be mandatory for all EHA Fellows. Priority will be given to advocates who have attended last year's capacity building event and/or are engaged in European hematology patient networks. 

Please encourage your most important science-interested advocates to apply for an EHA Fellowship to attend EHA and speak to your umbrella group if they may be able to support EHA Fellows with travel costs.  

The CML Advocates Network can provide a limited amount of travel grant of up to 500 EUR to those European CML Advocates that receive a fellowship.

To apply for an EHA Fellowship, please ask your advocates to register HERE

Deadline for applications is 29 April 2017, accepted advocates will be informed in the first week of May. 

If you have any questions, please touch base with lidija@lepaf.org 

Non-Adherence to treatment in chronic diseases is  a  well-known problem. The dramatic evolution in CML  treatment  in  the  last  decade, resulting  from  the  introduction  of Imatinib  and  followed  by  second  generation TKIs,  has  turned  CML  into  a  kind  of  chronic  disease where patients need to take their medication on daily basis.

In  2012, the  CML  Advocates  Network decided   to   conduct   a   large, scientifically sound international study on adherence. It enrolled patients from 9/2012 to 1/2013 based on  a  comprehensive  questionnaire  in  12  languages.  The  aim  of  this  study  was  to  investigate motivations  and  behavioral  patterns  of  adherence  in  CML and  subsequently  support  hematologists and   patients   to   improve   adherence   and   develop   suitable   adherence   tools.   Overall   2.546 questionnaires filled in by CML patients from 63 countries and 79 CML patient organisations were returned.

Our publication “Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries” has been a tough ride for us non-scientists over the past three years, given we needed support to do the data analysis and write a scientific paper.

Our paper has now been published in the Journal of Cancer Research and Clinical Oncology

THE EUPATI PATIENT EXPERT TRAINING COURSE IS TAILORED TO PATIENT ADVOCATES AND TURNS THEM INTO PATIENT EXPERTS IN MEDICINES RESEARCH AND DEVELOPMENT.

DEADLINE FOR APPLICATIONS IS 31 MARCH 2017

The EUPATI Patient Expert Training Course in Medicines Research & Development is an exciting and unique opportunity, offering patient advocates expert-level training that is specifically tailored for them. 

This 14-month tailor-made course, based on e-learning with additional two face-to-face training weeks, gives you the tools as CML patient advocate leaders to be able to contribute to be part of the research and development process and all related regulatory processes. It helps to understand all processes of pre-clinical and clinical research, drug safety, benefit/risk assessment and health technology assessment at an expert level.

So far, three CML advocates members have participated in the EUPATI course: Conny Borowczak, Aimo Stromberg and Sarunas Narbutas. Read about Conny's experience by clicking on "Read more", and contact them if you have questions.

We encourage European patient advocates (from the wider European region as defined by WHO) to apply before the deadline of 31st March at https://www.eupati.eu/third-cycle-apply-now/

 Click on read more for Testimonial.